Can Lupus symptoms change?

When initially diagnosed in 1999 I had an overlap with Discoid Lupus and 'mild' Systemic Lupus - (I was practically unable to walk but had no organ involvement, hence the term mild!). It was always my understanding that Lupus could 'attack' any part of the body/organ over time but when speaking with a new consultant at St. Thomas' this month, I was told that since my original diagnosis involved skin & muscle/joint issues any subsequent 'flares' would likely attack the same areas and not my organs - is this really true?

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  • Dear LynnJ,

    I can only reply that I have discoid and systemic lupus et al, diagnosed about 18 months or so ago (probably longer but the memory doesn't work too well these days) Before diagnosis, I now realise, that the copd, being the first sign, was lupus related. Since then I have joint, soft tissue, gullet, stomach, and duodenal involvement but it is not too clear whether this is Lupus or drug related, so I can't say for sure. In my mind (which is never that clear!) it is all lupus related insofar that I have always had a cast iron digestive system. It's a case of taking each symptom on it's own merits and dealing with it from there.

    I do so hope you stay clear of further involvements. Take care and feel well. Kath

  • Thanks Kath - can say the same about my memory, but that's probably more age related (or child induced!) than anything else! Will keep popping the steroids and keeping a positive mind in the hope I don't experience too many flares! You take care too.....Lx

  • I think that the honest answer is that they don't really know. I was diagnosed with discoid lupus 7 years ago and over the years my symptoms changed to include organs too. I don't think that it matters what it is called as long as we get the right treatment and some relief from the symptoms. Hope you feel better soon.

  • Thanks Margaret, I had thought that there is some chance of symptoms changing and I'm sorry to hear that has been the case for you. Hope you are coping ok and getting good treatment/some relief? I'm feeling much better this week so hopefully it was just a small 'blip' which I've managed to stop before a full on flare! Will put my lippy on and just keep smiling! x

  • I heard that a pattern is established with lupus flares? What ever happens inside of 10 years with your flares etc...will stay that way...

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